Tuesday, July 29, 2014

Background on Nirvana's eczema


Meet my beautiful daughter, Nirvana. She is 8 years old. She has suffered with eczema (she calls them her 'itchies') since she was 2 years old. We have gone through so much trying to help her heal. It started off as a round little patch on her thigh- we thought it was a ring worm, and even the pharmacist thought it was ring worm. Naturally, we treated it with medication but it only got worse, and after many trials and errors we discovered it was eczema. She mainly gets it on her legs, but sometimes it attacks her arms and back as well. This year it went onto her face, but we managed to clear it up after a few weeks.

One year, we visited a dietitian who told us to eliminate various food groups such as sugar, wheat, fruit, preservatives, starch and then reintroduce each one at a time. You can only image what this poor child went through. It's hard enough saying 'no' to a treat after dinner, image saying 'no' to everything a child finds yummy! After all this, we found no healing. It only got worse. We even changed washing powders and cut out stay soft completely, still with improvement.

Then, we visited a Homeopath who suggested we try different creams and medicine drops. Unfortunately, we had no luck there either. We tried so many different treatments, both natural and allopathic treatments. Here are a few things we tried: codliver oil; coconut oil; olive oil; probiotics; special soaps; multivitamins; vitamin A, D and zinc; primrose oil; aloe creams; tea tree; allergex, Desalex anti-histamine; cortisones and many more.  We bought every cream on the market and tried them. Friends gave us little tubs of creams that they had experienced positive results with. And still, little Nirvana was not healing. 
What is so hard with eczema, is that every person is different, and some treatments work for some but don't work for others. Our home kitchen looks like a pharmacy because we have so many different creams and anti-histamines. If one didn't work, we moved on tot he next.
This is what Nirvana's legs looked like - itchy and painful. An 8 year old cannot control this nor resist the urge to scratch. She would keep my husband and I up all night.
I then visited a specialist in allergies and asthma. We had allergy tests done and discovered she is allergic to dust and animal fur but this only gave her hay fever, not the eczema. The specialist gave us a cream called Protopic. It worked amazingly in the beginning. Since we were at our wits end , with the eczema quite bad by then, we needed to use Bactroban, an antibacterial cream, along with a cortisone cream called Elocon. This, of course, I did not want to use for too long as it is not good for anyone. It helped clear up the bad itchy redness and once it had cleared I maintained the eczema with the Protopic. Unfortunately, this only helped  for a short while. Her eczema came back, especially when the weather was very cold or very hot.

We later discovered that Nirvana was allergic to cortisone- she would break out in boils all over her legs where we used the cortisone. So that was out. (Which I don't see as a bad thing, but it was a quick healing solution).

Nights became increasingly difficult for my family. Nirvana would scratch and scratch until she would bleed. My husband and I take turns sleeping with her so that we can try control the scratching. We would wrap her legs every night in bandages so that she could not get to her itchy skin too easily. In May this year, her legs really took a bad turn for the worst.


We visited a new dermatologist specialist and he advised to try UVB treatment. Nirvana would have to stand in an upright apparatus that looked like a sunbed, for 20 seconds. The first 7 sessions went amazingly well. It looked like we had found our miracle. Her legs cleared up and the scars were starting to go away. Unfortunately, the weather became extremely cold and Nirvana's legs broke out again. It was at this point that our doctor had been approached by a company wanting to show the South African market what their products have been doing for decades in France. He put our names forward to the medical company, and to our amazement we were chosen to visit Avene, in France, for 3 weeks of treatment at the Hydro Centre. Wow, what a great adventure we have ahead of us and we are thrilled to see the outcome.

4 comments:

  1. Nirvana and you as a family so deserve this trip and opportunity ! - I am following your journey with well wishes for a superb outcome ! ;)

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    1. Thank you Heather. You're always a super star!

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  2. Your story is almost identical to mine. I wish you every success with this new treatment. No child should have to suffer like this. I have also blogged about my story (not quite as eloquently as yours) if you are interested the link is:
    http://athomewithmyblt.blogspot.com/2013/08/the-eczema-chronicles.html#.U-PRl_mSx8E

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    1. Thank you Lisa. I just read through your blog and my heart bleeds for you. Please keep in touch... these products from Avéne will be coming to SA very soon.

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